July 2007 - Month 1 at Home
Dad filmed me when I was mad! Click here to view the movie.
7/30/2007 9 Months Old
Mom went to the doctor today. There are three levels of remission for CML and I hit
the second one in April. My results for my last big blood test to test for the third level
were not what the doctor was hoping for. So I now have to go up on my chemo dose.
If I don’t hit the third level in 3 months, we may have to consider different treatment
options. There are several new drugs called “super Gleevec” that I can try, but we
are hoping we won’t have to use our back-ups so early. There would also be a
possibility of a bone marrow transplant if Carrie is a match. We are praying hard that
the meds kick-in and we don’t get to that point. (more CML info)
I was very upset since things have been going so well and the side effects were
getting better.
Mark and I spent the afternoon listening to pod casts of the CML top expert and it
sounds like they have several new options that will be available in the next several
years, maybe even a vaccine to correct the problem, so you don't have to take the
chemo forever. We are feeling better now.
In general it takes about 6 months to adjust to a dose increase, so I will be starting
over. My sweet angel Rees needs full attention right now, so I am hoping my tummy
and intestines will adapt quicker this time around, and that my anemia does not get
worse.
Rees had a great day playing with Ya Ya and Pop Pop who had to leave this
afternoon. Today Rees is 9 months old. What a tough, sweet guy.
7/27-29/2007 Happy Birthday Ya Ya
On Friday Aunt Rebecca and Uncle Randy came from St. Louis to meet Rees. They
got to peek in the window Friday night and on Saturday, after they de-germed from
the flight, they got to come in an meet our big boy. Rees loved playing with his aunt
and uncle. It was great to see Mark’s family
Rees is becoming more and more adamant at rubbing off his cheek pads and tape
that is securing his feeding tube. His poor little cheeks are raw and red. He is also
finding new ways to pull at the tape by sticking his finger up through the open area
above his mouth with one finger and pulling it down. On Friday we experimented with
a new tape style to prevent this. He now only has tape on one side. Rees’ sweet
cheek with no tape is such a beautiful site.
On Sunday morning Rees spit up a little of his cereal and some made it to his trach.
We were very scared. We suctioned it out and called the on-call pulminologist, who
said to watch him closely, but that we need to verify with his doc on when to continue
his food. It is so important that he keeps getting his food so that he doesn’t have an
aversion to food later.
Ya Ya came to visit for her birthday on Sunday. Her present was kissing Rees’ sweet
cheek with no tape.
Rees’ belly is soft! Over the last couple of weeks Rees belly, that in the past was
hard and distended, has been getting softer and softer. Now it is completely soft. He
even has wrinkles when he bends and wiggles.
7/22-26/2007 Mid-Week Update
We are still busy this week orienting nurses and finding a right fit. We did get our
August schedule and we are in pretty good shape. The good news is our insurance
has pre-approved Rees to have 24 hour-a-day nursing through the end of September.
One of our favorite night nurse returned this week after being out sick. We are so
excited to have her back.
We also met with a Medicaid case worker and nurse this week and they seemed very
hopeful that Rees would qualify for Medicaid for medically dependant children. This
is a big relief as our insurance allotment for medical equipment and supplies will only
last a couple of months with all of Rees’ gadgets. Medicaid will help pay for anything
our insurance doesn’t. We should hear something in 1 to 3 months.
Wednesday was a very busy day. Rees had lab work done at the TCH outpatient
building. Our tough guy was very brave while they fished for a vein. Mom aborted the
mission, but gave a second nurse a try. She got it in one try. The results were very
good. His one elevated liver function test is still steadily coming down. His albumen
levels which measures protein status was better than his last test, and this was after
we stopped the protein supplement in his formula. We do have to go back for more
blood work in a couple of weeks to check on his B12 levels. He may have lost the
exact portion of the intestine that absorbs B12. If so, he may need routine B12 shots.
After the lab, we went to the orthodotics lab. Rees was measured for his helmet and
a plaster cast made of his head. He did very well. The techs wanted us to take off
his clothes so he wouldn’t get plaster on them, but since mom has lots of experience
with washing plaster from clothing after making T-rex teeth at the museum, I didn’t
make Rees strip down. We did have a scary, stressful moment afterwards. Plaster
powder got everywhere, including under the gauze protecting his trach site. If any
type of particles gets to his trach, it could be very dangerous. Mom quickly did a
modified trach care session to remove the plaster dust. We need to tell the lab to
have all trach patients wear bibs. The helmet should be ready in 2 weeks. Then Rees
will have to wear it for about 2-3 months.
Mom and dad are trying to keep up with our sleep, which has been much better
having had our nursing schedule filled this week.
7/21/2007 Weekend Report - Happy Birthday
Uncle Bill
Lately, Rees has been trying to speak! It is difficult for him with the trach and
paralyzed vocal chord but that does not stop him from trying. We made a clip of the
talker - to see it click here.
7/19-20/2007 One Month at Home
Tomorrow is Rees’ one-month homecoming anniversary. We are so proud we have
done so well. We know many friends that had overnight stays in the hospital shortly
after going home.
Our insurance company and nursing company has been busy trying to find a solution
to our “gaps” in nursing coverage. Yesterday our new day nurse had to leave for a
family emergency, but a replacement was found and sent right away. We also have
night nurses scheduled Wednesday through Saturday. Today three new nurses
trained on our case. We are told we should not have big gaps any longer.
Today ECI the agency that provides developmental therapy for kids under 3 came and
did their initial assessment. They were here 3 hours. Rees and mom were very tired
after the session. Rees did well. They assessed him at a level of a 2-4 month baby.
His corrected/gestational age is about almost 5 months, which means Rees is doing
very well for all of his health set backs and extended stay in the hospital. They gave
us a few more exercises to add to our regimen that the hospital occupational
therapists gave us. A therapist will now come once a week to work with Rees at
home.
7/15-18/2007 Mid Week Update
We are having a tough week. Rees has two main night nurses. One is in the hospital
and the other one’s daughter is in the hospital. We have no night nurses Monday
through Thursday. We haven’t gotten to talk to them so we are praying everything is
ok. Even though we technically have 24 hours of nursing approved from insurance, it
is not a guarantee.
Rees had an outing Monday to visit a neurosurgeon about his head that got a little flat
while confined to his back while he recuperated from his surgeries and sick tummy.
Next week Rees will be fitted for a helmet that he will have to wear 23 hours a day for
about 3 months.
Mom had a Procrit shot Monday because my red blood cells were pretty low.
Hopefully the shot will kick in soon and help the anemia—I really need it this week.
Today Uncle Brit came to train in Rees’ care with his nurse while mom went to an
appointment. We are so lucky to have a couple of brave relatives willing and able to
learn Rees’ routine in case we need to call for reinforcements. Cousins Anna and
Ben and Aunt Amy got to meet Rees too.
Not sure when the next update will be….we are tired and busy.
Rees is busy too. He is now turning over—quite a feat since he is tangled in his
tubing. We are VERY proud. He is also “talking” more and more. What a precious
angel he is.
7/13&14/2007 Weekend Update
Friday was Rees first day to hang out with just the guys. Pop Pop and Dad took care
of Rees—again no nurse in the afternoon. Mom went to the museum. Then she and
Ya Ya went shopping. The last time we went shopping was maternity clothes that I
never got to wear.
Rees got a new monitor and leads on Friday that are MUCH better than our last set. It
has made such a difference. It barely beeps. And, the new leads are on Velcro
bands that are much easier to switch positions than the adhesive tape bands that are
messy and temperamental. Best news of all Rees’ readings are better.
Rees is moving and grooving. This week he started wiggling his torso. We are so
thrilled to show off his progress to his doctors. (We ran into his neurologist on
Thursday, but Rees was sound asleep.)
7/12/2007 Great Report
Rees had a full day at Texas Children’s Hospital today with lab work and
appointments with his GI and pulmonary specialists. He received glowing reports
from both doctors. His GI doctor was very happy with Rees progress and that he is
enjoying his cereal and applesauce. She increased his volume of food, discontinued
his vitamins and calorie additives, and approved him to have two sittings of cereal a
day. Rees is especially excited about not having to take his yucky vitamins, which he
would gag up occasionally.
The pulminologist said Rees is doing “remarkably” well. If we hadn’t had the pulse
oximeter problems, he would have taken Rees’ vent settings down today—making
our frustrations with the equipment even greater. We have a new monitor now.
Rees did a great job handling the busy day. We started loading up at 9:30 am for the
trip and returned home at 5 pm. Before we left Gee Gee got to hold Rees before she
headed back to Indiana.
7/11/2007 Evening Update
No night nurse tonight and busy day of appointments tomorrow. Mom is off to take a
nap before her shift starts at midnight.
7/10/2007 Evening Update
Rees’ poops look a little better with the antibiotics, but the great debate over whether
is monitor readings are accurate is still going on. It is very stressful. Of course Rees
isn’t bothered by the hubbub. He is either bright-eyed and looking around and playing,
which mostly consists of gnawing on his hands and kicking his legs, or in deep
sleep.
Today mom went to the museum for an event. The longest stretch away since Rees
came home. Both Rees and mom survived—thanks to dad and Gee Gee.
7/9/2007 Evening Update
We are now experiencing monitor hell. Rees’ pulse ox monitor has been acting up,
well we think. There is no way to know for sure if the machine is accurate. Even
when Rees seems perfectly fine, his monitor says his oxygen level and heart rate are
too low. It is quite frustrating, because you have to look at the monitor and look at
Rees and decide which to trust. Today we insisted that the equipment company bring
a new machine, so we could see if they got the same readings. Nope.
Rees has also had lots of runny poops, so his GI doc ordered a new round of
antibiotics.
We see both his pulminologist and his GI doc on Thursday following a big lab work up.
7/7&8/2007 Evening Update
Rees stayed up late playing with Gee Gee when she arrived on Friday night. They
have had a fun time together. Gee Gee has done a great job learning to help with
Rees’ treatments.
Rees is doing more and more with his hands and legs. We are so proud of him. Mom
ran into Dr. Brenda on Saturday and gave her a good report to send back to NICU.
Congrats to cousin Toby and Renee who were married in Jamaica on Saturday.
Wonderful news from the NICU! Rees’ girlfriend Sophia went home on Saturday. She
is the tiniest baby, born at 10 oz., to have survived at Women’s hospital. We are so
proud of her and her parents. Please say an extra prayer of thanks to God for
protecting her and keeping her tough.
7/6/2007 Evening Update
Uncle Bill drove Rees to his doctors appointment today while mom and nurse Ivy sat
in the back with Rees. Dad got there just in time for Rees’ hearing test. Unfortunately
Rees didn’t pass, so we will be scheduled for a different type of hearing test (ABGR)
at Texas Children’s. He has already had an ABGR at Women’s and he did not pass,
but did much better than today’s test. Today part of the problem was that the hearing
test was getting interference from the noise of the ventilator.
The ENT doc did look in Rees’ ears and said everything looked good with no fluid.
Fluid build-up is common with preemies who were on oxygen as long as Rees. If
Rees would have had fluid it would probably have led to ear infections and needing
tubes like all of his cousins in Waco and St. Louis.
The doc also looked at his trach site and thought it looked great. He also thought
Rees looked fabulous and asked what exercise program he was on, since Rees is
down to one chin. The last time the doc saw him Rees had about four chins and was
“swell” from surgery.
Mom had Rees all on my own this afternoon. We both did well and enjoyed our first
time alone. (But, we were both excited to see dad when he got home.)
Tonight Gee Gee, Rees’ Indiana grandma arrives. Rees is trying to stay up to see her,
but he is very tired from his busy day.
7/5/2007 Happy Birthday Cousin Michael
On Friday Rees has an appointment with his ENT. The plan is to conduct hearing
tests and examine the trach site. To prepare, mom and dad drove to the doctor's
office in the Med Center and scouted out the parking/valet situation. Mom even
obtained the phone number to the parking garage so she can call prior to the
appointment!
Today was the first time we left Rees alone with the nurse--a whole 20 minutes.
Tomorrow is the first time mom will be all on her own to take care of Rees in the
afternoon. Mom is a little nervous about this big event.
Rees' Gee Gee is flying in from Indiana on Friday night. Pray for good weather and a
safe flight.
7/4/2007 Evening Update
Happy 4th of July! The Potts crew had a great holiday—our first one with Rees
outside the hospital. Halloween, Thanksgiving, Christmas, New Years, Valentines, St.
Patrick’s Day, Memorial Day, Mother’s Day, Father’s Day….all in the hospital. We
celebrated freedom and independence from hospitals and central lines. Our friend
Laura brought Rees sparklers to watch from the window, but Rees snoozed all
afternoon, so we had to postpone the show.
Rees is getting stronger and stronger and trying to talk to us over his trach more and
more. Today our day nurse went home early because she felt ill. Rees tried out the
baby borjn baby sling this afternoon and snuggled on mom’s chest while she worked
on the computer. I tried to show him his popular website, but he didn’t want to wake
up.
Please don’t forget to donate your healthy blood. Mark is still keeping his
appointments donating platelets and will soon be a gold level donor. There are so
many in need. I just heard today that a friend from college Rebecca Danis Homes has
a 3-year-old son who was recently diagnosed with leukemia and is undergoing
several transfusions with his treatments in Dallas. Please say a big prayer for Gage
Holmes as he fights his leukemia battle.
7/2-3/2007 Evening Update
Two nights in a row without a nurse has drained mom and dad. If Rees’ feeding tube
had not started causing throw-ups, we could have rested easier, but we had to keep
close eye around the clock to avoid aspirations. We were very excited to see our
nurse tonight!
Today Rees had his feeding tube replaced and he is doing great. He was not happy to
be back in the hospital with people sticking things down his nose, but he did not
complain too much. Mom did get a chance to snap some glamour shots without tape
on his sweet cheeks.
Good news from the NICU. Rees’ buddy Joaquin went home on Friday! Joaquin is
another 23 weeker, but he went home just a few weeks after his due date--what a
stud. He will be celebrating Independence Day with his mom and dad at home. We
are so proud of him and his family. We are praying that our other 23-weeker friends,
Sophia and Christopher, will be home soon too.
7/1/2007 Evening Update
Rees slept most of the day—mom and dad tried to catch up on rest too. We are all
tired. Mom was up during the night with the nurse because Rees’ monitors were
going off. We had to wake him up to see if he was ok—he smiled and looked around,
wondering what the fuss was all about.
Ya Ya and Pop Pop came tonight, which is perfect because the night nurse didn’t
show up. We are taking turns holding Rees and keeping his fingers off his feeding
tube.
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